You are not alone

My blog is for all those who have ever felt different from anyone else, especially if you have been bullied or ostracized as a result. Here I will share whatever nubs of wisdom I have gathered during my lifetime of living with a physical handicap. What makes you different may be something else, such as your race or your sexual orientation, or it could be due to something that happened to you such as being physically or sexually abused. Whatever it is, know that you are not alone. I, and many others, have experienced something like what you have gone through. May you find peace, acceptance and wisdom from what I share here.

Author: Dr Ness

I was born with Amniotic Band Syndrome and grew up being ostracised by most of the other kids at school. Consequently, I tended to spend all my effort doing well in school, often scoring at the top of my class in most subjects. I have a Ph.D. in Botany, and now teach biology and genetics at a private, Christian, four-year liberal arts college in Northern California. I am an outspoken advocate for lost causes and the downtrodden, and strongly advocate for equal rights for everyone, regardless of sexual orientation, gender, race, ethnic origin, social class, or disability.

Of all the parts of my story of living with birth defects, this is the most difficult to tell. Being a survivor of sexual abuse comes with a lot of baggage, not the least of which is actually seeing myself as a survivor and not a victim. Having been sexually abused, I am, of course, a victim of sexual abuse, but to heal it is important to get past seeing oneself as a victim. I now recognize that I am a child of God who is loved by God and I am capable of loving and accepting myself. I am a survivor of sexual abuse. Sexual abuse wounds a child deeply causing feelings of guilt and self-loathing that lead to low self-esteem that can last a lifetime, if healing from these wounds never occurs.

So, why would I want to even share this part of my story? First, because it is a part of who I am, and it shows that surviving and thriving, even after the combined traumas of being born with birth defects and being sexually abused, is possible. I hope that hearing my story and seeing where I am today will give hope to others who have experienced similar things. Second, and related to my first reason for telling my story, is that many people have been sexually abused, making the telling of my story all that more important. Being sexually abused causes deep-seated and unwarranted shame. There should be no shame associated with being a victim, and there should certainly be no shame in being a survivor of sexual abuse. Any shame associated with sexual abuse should be heaped on the perpetrator, not on the victim/survivor. Sexual abuse is a terrible thing, but life does go on afterward, and it can go on successfully and joyfully, in spite of the sexual abuse.

To put my story in perspective, consider the following statistics:

In a 2012 maltreatment report, of the victims who were sexually abused, 26% were in the age group of 12–14 years and 34% were younger than 9 years.

Research conducted by the Centers for Disease Control (CDC) estimates that approximately 1 in 6 boys and 1 in 4 girls are sexually abused before the age of 18.

90% of child sex abuse victims know their abuser.

60% of sexual abuse victims never tell anyone, and males are much less likely to tell anyone.

Only 4-8% of sexual abuse reports are fabricated. This is especially important to remember. A child that reports they were sexually abused should be believed, as such reports are almost always true.

So, in many ways my story is not all that unique. A majority of those sexually abused were under the age of 14, as was I. I knew my abuser. Although I did eventually tell others about being sexually abused, I didn’t do so until I was in my 30s, well after the abuse took place. Another thing not mentioned in the statistics above is that many children who are sexually abused are emotionally vulnerable, something that pedophiles seem to have an ability to sense and use to their advantage as they “groom” their victims. My emotional vulnerability stemmed from having birth defects and being teased and bullied in school and elsewhere. I was a lonely child, ostracized by many of my peers, making me particularly vulnerable to attention from an adult with evil intentions.

When I was 8 years old my family moved from our house in the Greenwood district of Seattle, to a residential neighborhood in the town of Edmonds, just north of Seattle. The new house was larger, with three bedrooms, which meant both my sister and I would have our own rooms.

My room was on the second story, over the garage, a part of the attic that the previous owners had converted into a bedroom. I was excited to have a room of my own, but it also felt a little isolated from the rest of the house. To get to my room, I had to pass through the kitchen, into the utility room between the kitchen and garage, and climb a flight of stairs that ended in my room just over the garage. The utility room also had a door to the outside, and I still remember some nights worrying what would happen if a burglar broke in through that door and cut me off from the rest of the house.

Our new place also had a large, fenced backyard. I still remember all the fun I had in that backyard building a fort with left over wood scraps and pretending it was everything from a fur trapper’s cabin to an army outpost overlooking enemy territory. Not long after moving there I made friends with twin brothers that lived across the street from us. Their father was in the National Guard, and he often brought home expired K-rations. The twins and I would sometimes get a few of these and eat them in my fort, pretending we were out on patrol.

About a year after moving to Edmonds, my parents allowed one of my dad’s old friends to park his motorhome in the backyard and live there. He was separated from his wife and spent part of his time working in Alaska as a chef working for the oil companies installing the North Slope oil pipeline and the rest of his time in our backyard. Because Irv was my parent’s friend, and they seemed to trust him, so did I. He seemed to take an interest in me, and often bought me a treat when he, my parents and I went out to eat.

Just a warning at this point to those who may be troubled by reading the details of what happened to me when I was sexually abused. If you feel that reading about it might be too triggering or traumatizing, you might want to skip the next three paragraphs. I have clearly marked these paragraphs in red so you can easily skip over them.

The bathroom in our house was on the first floor, and on days that I took a bath, I would leave the bathroom and go to my bedroom, with a towel wrapped around my middle, to get dressed. One day, as I reached my room, I heard someone ascending the steps just as I sat on my bed. I felt a bit shy about someone coming into my room while I was still undressed, so I told the person I wasn’t dressed yet. It turned out to be Irv, and he assured me it was no problem if I wasn’t dressed. I was still a little embarrassed to have him come into my room that way, but at 9 years old, I wasn’t sure how to object further.

What happened next is still a bit hazy in my mind. It’s not that I blocked it out, because I do vividly remember most of what happened, but how it got started I don’t remember well. Somehow Irv ended up performing oral sex on me. I was panicked. I did not understand why he had my penis in his mouth. At that age I had no concept whatsoever about sex, and all I knew is that what was happening was not right. I didn’t have a concept of it being wrong in any moral sense, just that such things were gross, and I couldn’t understand what in the world was happening. Why was he doing this gross thing?

At some point I ejaculated in his mouth, and I remember being mortified. In my 9-year-old mind I had just peed in his mouth. It was like I couldn’t stop it from happening. I was afraid he would be angry with me, but I was also just confused. I had no frame of reference for what was happening. At that point, Irv stopped and assured me that everything was just fine. he was just doing what he did to make me feel good. This confused me even more, but he seemed so casual and nonchalant about it that I gradually calmed down. He left my room soon after that and I dressed.

My confusion about all that happened that day is understandable, considering that I was just 9 years old, and I attended a Christian school which provided no sex education. At that time, in the early 70s, there was not even that much in the way of sex education in public schools, and what did exist was often not a part of the curriculum until at least 8th grade, which is too late for many children, considering a majority of children are molested before the age of 14. As typical parents, my mom and dad had not yet had any discussion about sex with me either. I knew basically nothing about sex, which added to the vulnerability that Irv used to take advantage of me.

Sadly, this was just the first of many times that Irv molested me. Not long after this first event, I did some of my own research to see what had happened. Even though these were pre-Internet days, I was a smart kid and knew how to find out what I wanted to know using resources at the library.

Each time Irv molested me, I became more and more conflicted. Physically, what he was doing to me felt good, but on an intellectual level I recognized it was morally wrong. It seemed especially wrong because he was a man and I was a boy, which made what he was doing a homosexual act. In the church I attended, homosexuality was considered especially sinful.

As the abuse continued, I felt more and more guilty, but also more and more trapped, because my body kept betraying me. I hated what he was doing to me, but my body craved it, because it felt so good. I now know this is typical of how children who are molested feel. They know what is happening is wrong, but because it feels good physically, a part of them actually welcomes further sexual abuse. Because they start “looking forward” to it, they start feeling that much more guilty and demoralized. If what is happening is wrong, but I still want it, I must be asking for it somehow and I must be a bad person. Sometimes the child even begins to believe that they even asked for it from the beginning, and it is therefore their fault.

What needs to be remembered is that a child is incapable of proper consent and is therefore not responsible for what is happening. Even if the child comes to look forward to the sexual abuse, they are not consenting to it. As a person heals from sexual abuse, often through therapy, coming to this realization is very empowering, and can help alleviate the deep-seated feelings of guilt and poor self-esteem caused by the abuse. Anyone who knows a child who has been sexually abused needs to realize this as well, so they can assure the child that it is not their fault. What happened is entirely the fault of the perpetrator.

Irv also routinely reminded me not to tell anyone. He told me this was our secret. He was doing it because he loved me and wanted me to feel good. I did not know how to tell him to stop (I eventually was able to when I was an older teenager), so it kept happening. Now I know that this kind of pattern is so typical of what happens to children who are sexually abused. The perpetrator psychologically manipulates the child to keep the abuse happening and prevents the child from telling by a combination of threats and treats. Irv never threatened me in a strong way, although he made it clear that telling would be a very bad thing to do. On the treat side, he would often give me little gifts, and even gave me spending money every so often. Unfortunately, the gifts and spending money made it even worse for me, making me feel doubly guilty and complicit.

As I said above, I never did tell anyone what Irv had done to me. I have played over in my head many times what might have happened had I told, and it never seemed to lead to a positive outcome. Part of the problem was that even once I recognized what was happening for what it was, sexual abuse, I still felt so guilty that even thinking about telling mortified me and filled me with feelings of shame. I also felt extremely alone, like I was the only person who had ever allowed such a terrible thing to happen to them. I was aware of stories of girls that had been sexually abused but did not know of a single story about a boy having been sexually abused.

Even into adulthood, after I had finally been able to make Irv stop in my late teen years, I continued to keep the secret. I continued to feel very alone in my shame and guilt, feeling like there were no other men that had ever gone through what I did. Finally, in my 30s, I did break the silence, first in an online forum for abuse survivors on CompuServe, and later with a therapist and my family.

I remember the first time I had written out my story and posted it to the forum. Even though I was posting my story using a pseudonym, I had a backache for two days leading up to the day I was brave enough to post it. The response I received from other forum members was overwhelmingly positive, and I soon learned of many other men who had been sexually abused much like I had. Of course, part of the reason I had felt like no other boys had gone through what I did, is that fewer boys are molested, and boys are less likely to tell anyone. Fewer statistics on the incidence of sexual abuse in boys were available then, as well. Now it is estimated that 1 in 6 boys are molested (for girls it is an even scarier 1 in 4).

Soon after that, I started therapy and shared the story with my wife. Once it was no longer a secret the healing of those scars began. It took years to fully come to terms with what had happened, and to know in my heart that what had happened was not my fault. I have also realized I cannot blame my parents either. They should not have been so trusting of Irv, but it can be hard to tell that someone is a pedophile.

There are clues that can be identified sometimes, but pedophiles are not the stereotypical mean looking, shabbily dressed, park-bench-sitting creep often pictured in people’s minds. Pedophiles are just like your average person, and often, as mentioned above they are a family member or close friend of the family, that outwardly can seem like a very nice person. I know that my mom has since felt that if she had it to do over again, she would never have trusted Irv. Ultimately, the blame for what happened falls on Irv alone.

Fortunately, being a survivor of sexual abuse did not ruin my spiritual life, which it can do for some survivors. Throughout the years of abuse, even though I often felt guilty, I still saw God as someone I could depend on, and that if what was happening represented sin on my part, God would forgive me. My faith in God and His goodness helped me survive.

I would be remiss were I not to close with a few reminders to parents with younger children. It is never too early to start teaching children about sexuality, in age appropriate ways, of course. Even very young children of 4-5 years of age can be taught the concepts of “good” and “bad” touch, making clear to them that it is always okay for them to tell an adult not to touch them if it makes them feel uncomfortable. It is also important that parents tell even very young children that it is always okay to for the child to tell a parent, or other trusted adult, when someone has touched them in a “bad” or uncomfortable way.

Parents should actively learn how to protect their children from sexual abuse. Get some books and literature on the topic and learn what you need to know to keep your children safe. Don’t forget that perpetrators are most often someone you and the child know. Learn to recognize the warning signs, and don’t let your children spend any time alone with someone who displays these signs. If something does happen, and you have made it clear to your child that they can tell you when things like that happen, learn how to respond appropriately. You need to believe what your child says, take it seriously, and seek the professional help that will help resolve the problem. Do not just brush it off, do something. Here are a few web sites that can get you started:

Lastly, a word about being gay. One of the fears I had when I was being molested was that I might be gay. As a young teen, in a Christian church that routinely condemned gays, this was an understandable fear. I now know that I am most certainly not gay, as I have never had any hint of attraction for other men. I also have come to recognize, however, that being gay is not a sin, and I am a strong proponent of same-sex marriage. I believe that God fully blesses same-sex marriage, and that the church should also fully accept same-sex marriage. It is time that the church be fully affirming of LGBTQ+ individuals. It is my hope that this will soon happen in most, if not all churches. God loves all His children.

For my 2nd grade year I switched schools to another Christian school in Mountlake Terrace. It was a grade school located north of where we lived in Seattle. Instead of riding the city bus to school, Mountlake Terrace had a small bus service of its own that picked me up right outside my house. Switching to a new school is always a little stressful, and involved getting a new teacher, and going to school mostly with kids whom I had never met before. A few of my friends from Seattle Junior Academy also switched schools, so I did know a few of the kids.

My sister and I doing what we both loved, reading.

My 2nd grade year was the beginning of my more difficult school years, where the teasing and bullying because of my birth defects started in earnest and became a regular feature of my school days. In addition to my finger deformities due to amniotic band syndrome (ABS), one of the effects of the amniotic band on my left ankle also became more apparent. The band caused the lower part of my leg and foot to grow more slowly than my right leg, so that by the time I was 7 or 8 years old, there was almost an inch difference in length between my legs. To prevent potential strain on my spine, from walking with legs of such different length, I started to have to wear a special pair of shoes where the left shoe had a 1 inch thicker heal and sole than on the right shoe. Add to that my thick glasses needed to correct my moderately severe myopia, and I presented quite the target for ridicule. I was a four-eyed monster with a limping gait and deformed fingers.

My abnormal appearance soon resulted in new nicknames made up for me by my classmates which were often variations of things like four-eyes, clodhopper, and the one that causes me the most pain in remembering it, nubs. Because my fingers were a lot shorter than normal, and, except for my right thumbnail and a grossly malformed nail on my right index finger, nail-less, the name “nubs” was used all the time for me. My last name, Ness, also got thrown into the mix as well, since I had monster-like appearance in their eyes, I was also commonly referred to as the Loch Ness Monster.

From an early age I loved animals. Here I am holding a rabbit at the petting zoo.

As the teasing and name-calling became more frequent, I sometimes end up in tears, which only made things worse. Crying in response to teasing and bullying just made me more of a target. I do not remember who my teachers were in 2nd or 3rd grade, or much about them, except that they seemed noticeably absent when the teasing and bullying occurred.

The regular teasing and bullying resulted in me ending up near the bottom of the social scale in my classroom, sometimes leading to other acts of random bullying. I remember that sometimes the teacher would leave the classroom and appoint one of the other students as class monitor. The monitor’s job was to write the names of any student who talked or disturbed the class while the teacher was out, with additional tally marks added for multiple occurrences. I was usually one of the better-behaved students, but sometimes the student monitor would write my name down anyway, and even add a tally mark or two if I complained. Students with too many marks would have to stay in for recess, something that happened to me every so often, as a result of dishonest and mean student monitors.

When I complained to my parents about the teasing and bullying I was experiencing at school, they were very sympathetic, but I am not sure they knew how to confront the problem. I remember my mom repeating the common aphorism, “sticks and stones may break my bones, but names will never hurt me.” Her advice was essentially to ignore the teasing, including trying not to cry. If I ignored it enough, she believed it would eventually end.

My dad added the additional advice that if it got to be too much, I could also fight back. I interpreted that to mean physical retaliation. I remember one day when I tried just that approach. Another student, a boy in the class ahead of me, was calling me names as he walked down the hallway just behind me. After a bit of that, I had had enough, and turned around and punched him in the face. Somehow my fist made a good, strong connection with his nose and he started bleeding. He ran to the bathroom in tears, and I had a few moments of feeling proud that I had stood up for myself. Later, though, I was disciplined by the principal for my aggressive behavior, which at the time seemed extremely unfair, considering the excessive amount of teasing and bullying routinely directed at me.

My new microscope. Notice the gigantic grin on my face.

One thing my parents, and some of the other adults in my life, did do that was helpful was to identify my strengths, and then help and encourage me to excel in those areas. I was a very intelligent and inquisitive child, so my parents especially encouraged me to excel academically. They did this by buying me science-based gifts for birthdays and Christmas. I remember getting a butterfly net and bug cage one time, and my most favorite gift of those early years, a compound microscope, which provided hours of fun as I looked at everything I could fit under the lens. My parents also encouraged me to read. Consequently, even though encyclopedias were expensive, my parents invested in a set of World Book Encyclopedias. I spent hours, not just looking at the pictures in them, but also reading many articles on anything that caught my interest.

Using my new microscope. I remember many happy hours peering at all manner of things through this microscope.

My teachers at church also encouraged me intellectually, as well as spiritually. I remember one teacher in particular, Dr. Koch, who had a PhD in chemistry. He gave me a small poster of the periodic table and encouraged me to learn the letter abbreviations for the elements. He also introduced me to the Chronicles of Narnia, by C. S. Lewis. I quickly devoured the stories, and their spiritual message was helpful to me in surviving and thriving, even while being teased and bullied at school. I identified with the children in the story who became kings and queens in Narnia and saw my own potential to make something out of my life. The stories also helped me see that as Aslan was there for the children in the story, Jesus was with me when I was going through difficulties. I just needed to put a brave face on and look forward to positive outcomes in the future.

My focus on academic excellence in school was helpful. Even though I was at the lower end of the social scale in class, with few friends, I did stand out as being the smartest kid in class. In one sense, as my grade school years passed, my classmates did look up to me at least for my intelligence. Unfortunately, even that distinction was sometimes turned around and used as a way to tease me. My first name, Bryan, was often misspelled by my classmates as Brian, and to make fun of me for my intelligence, they would sometimes turn the letters around and call me Brain. Although this did bother me, I still saw it as a badge of honor, in part. At least, I was smarter than them. I could use that to make a success of my life.

Another great gift for an inquisitive young scientist. A clock with a transparent front and back so all the innards are visible.

I was not the only child teased and bullied in my class, although I was the only one to be teased for having birth defects. At least two other classmates were also bullied frequently. I befriended both of them, and we made a small clique of our own that helped us survive. I also discovered that even though most of the other kids participated in the bullying, some of them felt kind of bad about it, and secretly treated me nicely, although sometimes, they would then turn around and participate in the bullying when being friends with me was socially inconvenient.

As I progressed onward through 3rd and 4th grade, I gradually learned better how to cope with the teasing and bullying. Ignoring it did help, which did lessen its occurrence somewhat, but it was still painful. I also adopted the attitude that even if they chose to treat me badly, I would treat them kindly anyway. It was my way of applying the Golden Rule, so nicely articulated by Jesus, “do unto others as you would have them do unto you.” Since I was the top of the class in all subjects, I also readily helped other students when they needed help on homework, math being a frequent subject where help was needed and I shone.

On the boat ride at Woodland Park Zoo with my sister.

As the bullying lessened over time, I noticed too that the boys were most often the instigators of what teasing and bullying continued. Often the girls were more kind and tenderhearted toward me, and were more willing to be my friend, at least some of the time, and at least not participate as frequently in the bullying. Consequently, I had a hard time developing very many friendships with other guys. Even as an adult I find it harder to make male friends and relate to males than to women.

Camping with my family somewhere in the Cascades. The dog in the picture is Duffy. My mom didn’t like dogs much, and Duffy was supposed to be for my sister and me. Even though my mom grew to hate Duffy, she was always his favorite person.

I want to assure any of my friends who went to school with me back at Mountlake Terrace that I do not hold any hard feelings toward any of you. I have long ago forgiven all my classmates for the teasing and bullying, as well as the teachers who were somehow either not fully aware of what was happening or did not know how to intervene constructively. Teasing and bullying of more vulnerable children, because they are different or odd in some way, seems to come very naturally to children. My main purpose in sharing these experiences is so other may understand what it is like for a child to experience such things, and that survival and healing is more than possible. I also hope it will bring some greater awareness to the problem so parents, teachers, and other adults can intervene more effectively.

Pretending to shave. This picture was at Christmastime at my Uncle David and Aunt Barbara’s house.

Instrumental in my survival through these years was the support of my parents and other adults in my life at that time. Even adults who may have no opportunity to intervene in the teasing and bullying, can have a very positive impact on a child who is experiencing these things. I would also add the importance of the spiritual component. Being taught about Jesus and his life experiences helped me to identify with him, who is often described as a “man of sorrows, despised and rejected.” I could relate my own experiences to what I imagined his had been as he grew up. Coupled with the many promises of Jesus in the Gospels that he would be with me when I went through trials, gave me strength to endure. Sometimes, in my mind’s eye, I would see myself standing on the top of a hill, with the wind blowing my hair, standing bravely and defiantly in the face of the struggles I was experiencing.

I remember entering 1st grade with very fond memories. Of all my years in school, 1st grade remains my favorite. I was extremely ready to go to school. I wanted to learn, and I especially wanted to learn to read. Books already played a prominent part in my life. I loved looking at picture books, I loved being read to, and I was ready to learn to do it myself. The second reason for such fond memories was that I was not teased or bullied at all during my 1st grade year. In subsequent grades the teasing and bullying would escalate, but in 1st grade all was well.

Initially, because I had just turned 6 years old the summer before school started, there was some concern on the part of the school that I was too young and should wait a year before entering 1st grade. I am thankful that my mother persisted in saying I was more than ready. Already, at just 6, I was clearly more mature than the average 6-year-old, and my intellectual curiosity was already evident to the adults in my life.

My parents enrolled me in Seattle Junior Academy (SJA), a 12 grade Christian school on Queen Anne Hill in Seattle. There was no school bus service, and my mom did not drive, so I took the #5 bus from the top of my street. It was just a short 3.5 mile ride each way. Today it doesn’t seem safe to send a child of 6 alone on a city bus to and from school, but this was not uncommon in the 1960s, and I never experienced an incident where I was in any danger. I walked the half block to the top of the hill where we lived, crossed Greenwood Avenue, and caught the bus every morning, and then got off at the first stop after the bus crossed the Aurora Bridge. SJA was just block from the bus stop.

The stairs I had to climb every day from the bus stop to the school.

My 1st grade teacher, Mrs. Cooley, remains my favorite teacher to this day. She was already of grandmotherly age when I started school and she ran a very tight classroom. One thing I will be forever grateful for, is that she allowed absolutely no teasing or bullying. My hands were noticeably different with my amniotic band syndrome (ABS), but she treated me just like any other child, and she required the other children to treat me as normal too.

My 1st grade teacher, Mrs. Cooley.

I loved school. We started each morning with the Pledge of Allegiance and had morning worship, which included singing a few songs from a Christian, children’s songbook. I remember that a lot of the learning involved filling out worksheets. I was almost always done with my work well ahead of the other kids. Mrs. Cooley had several activities kids could do if they finished their work early, but the one I loved best was using the classroom binoculars. Our classroom was on the north side of the school and overlooked the Lake Washington Ship Canal, with Fremont visible on the other side. I remember spending many minutes most days scanning the cityscape to the north and occasionally watching the mast of a taller ship as it made its way through the canal to Lake Washington.

My picture from the SJA annual. Notice the misspelling of my first name. More commonly it gets misspelled as “Brian.” Seems to have been my bane over the years.

As a part of our class’ music education, Mrs. Cooley provided recorders and taught the students to play them. This was one of the first times that I remember a need for making accommodations for my handicap. Due to the odd shapes of my fingers, I was unable to cover the holes on a recorder properly. As soon as Mrs. Cooley discovered this, she supplied me with a triangle to play. What could have been a disappointment, became a source of pride. I was the only child in the class to play something different than all the others. This also was the inspiration for later playing percussion in middle school and high school band. Incidentally, I now can play the recorder. I discovered that German recorders lack the grooves associated with holes on the common children’s recorders, like those used in my classroom. Without the grooves, I am able to cover the holes with my fingers and I learned to play recorder in college.

One other reminder of my handicap at that time was my inability to tie my own shoes. This was an important skill in the days before Velcro, as most children’s shoes had laces, and slip on shoes would not fit my feet. I still remember my mom telling me that I would learn to do it just fine, I just needed to practice. She never let my handicap be an excuse for not being able to tie them, and I did eventually learn to tie them. Even so, my shoes still were a reminder of my birth defects, as I had to wear two different sizes of shoe. The amniotic band that had been around my left ankle caused my left leg and foot to be stunted, resulting in almost a 2-size difference between my feet.

My sister and I looking at our encyclopedias. We spent hours with these, and both of us became avid readers.

Mrs. Cooley routinely made school fun. I remember one day, when we arrived, she said we would be going on a scavenger hunt. She had hidden notes in various places with clues as to where to find the next note. The final note was supposed to lead us to a surprise treasure. Just after finishing lunch we set out. We found all the notes, and we even found the treasure, a package of cookies buried in one of the playground sandboxes. Unfortunately, before we found the treasure, a dog had dug it up and ripped the package open. I remember being disappointed, but not too much, because at least we had solved the riddles and found the treasure.

Reading opened the world for me, and as soon as I was able to read it became difficult to find me without a book in my hands. By the summer following my 1st grade year, I became a voracious reader. There was a branch of the Seattle Public Library a few blocks from our house, and some days I would go there, check out a foot-tall stack of chapter books, and return them the same day, and get another stack. Reading later became a valuable escape from the teasing and bullying in school.

Looking at the Sears Christmas catalog with my sister. Oh the wishes we made.

On my way home from school one day, a few months after starting 1st grade, I accidentally got on the wrong bus, the #6 instead of the #5. It soon became apparent to me it was not taking the normal route, so I started to cry. A teacher from another school was on the bus and asked me what was wrong, and I told her the bus wasn’t going the right way, so I didn’t know how I was going to get home. Once it was discovered I was on the wrong bus, the bus driver helped me transfer to another bus that would get me home.

A typical City of Seattle bus like the one I took to school every day.

When I got home, my mom was worried, since I was later than usual. When I explained what happened, she concluded that maybe my eyes were near-sighted, and I had simply misread the #6 as a #5. She made an appointment for me to see an optometrist, and sure enough, I was significantly near-sighted. I still remember the day I got my glasses. The optometrist’s office was in downtown Seattle. As we left his office, I remember looking up at the tall buildings and realizing for the first time that there were windows in them all the way up their sides.

My 1st grade year and the following summer I also continued to make friends in the neighborhood. And again, these earliest friends seemed to not give me any trouble over my fingers. We built forts in the line of trees in my backyard. We pretended to drive in one of my dad’s old cars that no longer worked. I even remember my first foray into experimental biology. I had heard that cats, no matter how far they are dropped, always land on their feet. One of my friends that lived behind our house, on the other side of the block, had a second story balcony on their house. To test the cat theory, I remember taking their cat to this balcony and dropping it over the side, upside-down. Fortunately, the cat landed on its feet just fine, albeit a bit ruffled from the experience.

Playing in the snow with my sister in our backyard. I remember that when my hands got real cold, they would hurt excruciatingly as they warmed up. The scars on my fingers from my surgeries seem to be the main cause of the ache.

My 1st grade year provided a strong grounding which, I believe, was instrumental in helping me weather the more difficult years in subsequent grades. In a Christian school with Christian teachers I learned that God is someone who can be depended on for comfort. Our family also went to church each week and the teachers in my Sabbath School class further strengthened my spiritual connections with God. In fact, later, as teasing and bullying did begin to happen, these adults became anchor points for me. The church we attended attracted many well-educated people. One of my teachers there was a chemist, and I remember other adults there who were physicists, doctors and dentists. With my strong academic bent, this opened up a lot of avenues of learning.

Like all children, there are certain fragments of memory deeply etched, despite how young I was when the events happened. The 6.7 magnitude Puget Sound earthquake on April 29, 1965, just a couple months before I turned 3-years-old is one such memory. I remember our house beginning to shake and my mom grabbing me from the living room floor and rushing with me in her arms to the door frame between the living room and kitchen.

I remember visiting the Woodland Park Zoo, which was about a mile from our home on Phinney Ridge in Seattle.

Visiting the Woodland Park Zoo. I am most likely about 18 months old in this picture, right when I first started walking.

I remember the day I was running with a stick in my backyard when I was about 4, when suddenly, I stumbled, jamming the stick into my face as a fell. I remember all the blood, and my mom taking me to the doctor, and the doctor exclaiming how close I had come from poking out my eye. The stick had poked me less than an inch from my right eye.

I don’t remember when I first started walking, but I do know my first steps came later than average. This was not surprising, considering that my left ankle turned in at about a 40-degree angle. The doctors had told my parents I may not ever walk normally. I did start walking, though, at around 18 months or so. Once I started walking the world opened up for me, as it does for all infants. Sometime between 3 and 4 years of age I even remember my dad playing catch with me. I did not shy away from physical activities just because of my hands.

Playing catch in the backyard with my dad.

My sister, Karen, was born a couple months before I turned 4. My parents were worried throughout the pregnancy that she might be born with some of the same kind of birth defects as me, despite assurances that there is no genetic cause of ABS. When she was born, she appeared outwardly normal. She did seem to have some kind of problem with her lower back, though, but the doctor who delivered her played it down, not wanting my parents to stress over the new baby. I think he felt bad that if my sister did have some sort of problem that it would be devastating to my parents.

Eventually, my parents did take my sister to the doctors at Seattle Children’s Hospital and it was discovered that she had a mild form of spina bifida. Spina bifida is a congenital defect where the spine and spinal cord does not form properly. The reason Karen’s condition was not immediately detected is that she had the mildest form, often called spina bifida occulta, where there is only a small gap in one or more bones in the spinal column. Normally the entire spinal cord is completely enclosed in the vertebrae of the spine. In Karen’s case she had a small gap in the lower part of her spine. Although surgically repaired it did result in long-term problems with bladder control. She often did not know when she had to urinate until her bladder became overfull. When she was younger the problem led to many accidents, and she periodically wet the bed long after she was potty trained.

Feeding my doll with a bottle. Note the brace on my left leg, designed to straighten my ankle, which bent inward.

Having a baby sister around was wonderful. My parents had given me a doll before she was born, which I played with regularly, and now here was the real thing, a living, breathing baby sister. Older siblings often feel threatened when a new baby enters the family, but my mom tells me that I rarely showed any signs of jealousy over my sister. It may have been because at the age of almost 4 I was already well settled and didn’t see a baby sister as any threat to my security.

There are numerous pictures of the two of us together in which we both are smiling and laughing. My favorite one, though, shows me with her on my lap, holding my right hand in a fist and staring into the camera as if daring anyone to just try to do anything to my sister.

Don’t you even think about hurting my sister! Me at 4 with my sister who is a few months old.

Starting at the age of 4 I also remember branching out into the neighborhood and making friends. The two friends I remember best were Joanie and Chris.

Joanie lived next door and my mom often let her come over to our place to play. Our backyards were adjacent, and she had a little Pekinese named Meiling. Meiling loved to chew on rocks, and she would chase any rocks we threw for her.

My sister, Karen, with Meiling, Joanie’s dog. Karen is holding a rock that Meiling wants her to throw.

When we got a little older, Joanie and I would beg a few coins off our parents so we could go to the corner store about a block from my house. It was one of those old-time convenience markets and they had a whole rack of penny and nickel candies to choose from.

Chris lived a couple houses down and we spent many hours playing outside together too. When it was warm we would splash in my wading pool.

My friend Chris, on the left, playing with me in my wading pool.

What I remember best was playing Batman and Robin with him. The original Batman TV series came out in 1966, when I was four and a half. The show was very campy, and when Batman or Robin punched someone, in addition to the sound effects, the producers of the show overlaid colorful words like “POW” and “BIFF,” in all uppercase letters. The costumes were cheesy and the plots thin, but to a 5-year-old boy it was totally cool.

My mom fashioned a “cape” for me from a large towel which I would tuck into the back collar of my shirt. When I ran, the cape would flutter behind me exactly like Batman on TV. I was cool, no doubt about it. Even better was to get on one of the swings in my swing-set and after swinging as high as I could, I would jump out of the swing in pursuit of some imaginary criminal, my cape snapping in the breeze. I was always Batman and Chris was Robin, since I was the larger of the two of us, and I had a strong, confident personality.

I never remember feeling self-conscious about my fingers or feet with either of these friends. I only remember having fun together as equals. We did all the kinds of things young kids typically do together: running, jumping, swinging, swimming, throwing things, climbing trees, and playing with the dog. Most of the time we engaged in free, imaginative outdoor play. As my sister began to walk better she was often included.

Pretending to be a horse for my little sister.

On the other side of our house lived a retired couple, Mr. and Mrs. Fogh. They were like an extra set of grandparents to me. I would go to their house to visit, primarily because they had a dog, and I enjoyed dogs and cats a lot. I remember playing with their dog many times.

Mrs. Fogh would also get out a coloring book and crayons and let me color at her kitchen table. One vivid memory of my time at their house was when I sneaked some of the dog food out of their dog’s food dish and ate it. I got sick and vomited about an hour later, when I got home. I never tried eating dog food again, as you can imagine.

Mrs. Fogh also grew raspberries and rhubarb. I still remember eating fresh raspberries off her vines, with her permission, of course. I remember her cutting a piece of rhubarb sometimes when I visited, sprinkling it with sugar, and letting me have a few bites. She would often send me home with some rhubarb stalks and my mom would make delicious rhubarb sauce.

My mom, my sister, Karen, and me at a beach on Puget Sound. And yes, like most little boys, I loved to throw rocks in the water.

The only notably negative experience from this time happened when I was in kindergarten. There was a public kindergarten about a half mile from my house. When I was 5 my parents enrolled me there. After my mom walked me to school a few times, I was able to walk there on my own. For the most part kindergarten was fun. I got to know a few more kids, enjoyed the learning activities, and tolerated rest time just like the rest of the kids.

There was one little girl at kindergarten, though, that would tease me. I don’t remember exactly what kinds of things she said, but it was something about how I was different. In response to her teasing, I was sometimes mean back to her, and for some reason the teacher saw my behavior at these times as a problem.

I still remember the disappointment in my parent’s faces when they read a note written by the teacher in my report card about how I was not a very cooperative little boy. My mom talked with the teacher, and with me, to try and understand what the problem was. In the end my mom simply told me that it was not really a problem with me. She said the other little girl should not have treated me the way she did, and I should just try to ignore it. It was my first introduction to the saying, “sticks and stones may break my bones, but names will never hurt me.”

My dad, giving my sister and me the gift of reading. My dad was never much of a reader, but he did like looking at books and thought it was important for us to like them.

During these years I was still frequently visiting the doctors at Seattle Children’s Hospital, where they were poking and prodding me, and prescribed an ankle brace that often felt painful to wear. I also had a few surgeries on my fingers and toes, which also caused a lot of physical pain. Oddly, the pain and suffering from these things left little memory, whereas I still remember the teasing from the one little girl in kindergarten. I don’t remember the teasing to be particularly intense, or even all that relentless, but after such positive experiences with the friends I had made in my neighborhood, and the love I experienced from my family, the teasing pushed me ever so little off kilter. I did face much worse teasing in later years, but the shock of the first time it happened remains a bitter memory.

The first fragments of memory from my infancy come from sometime between the ages of 3 and 4 years old, and none of my earliest memories concern my birth defects. I was too young to know that there was anything wrong. My parents loved me, and I was secure, as babies typically are. Whether my birth defects made me different than “normal” babies did not concern me. Looking back at the earliest pictures of my parents, grandparents, uncles, aunts and cousins holding me and interacting with me, it is clear that I am loved. I am also smiling and laughing in many of these early photos. I am sure that I was in pain at times, but that was never the focus, at least not from anything I can recall. Early trauma can leave its mark, but a stable, supportive family environment can counteract those effects, based on my experience.

My earliest conscious memory was of wrinkled nylon stockings around the ankle of an old woman standing on the carpet in a sunken living room, an understandable memory from a baby viewing the adults in their world from floor level. It is just a flash in the back of my mind, with little context. Talking with my mom in later years about this memory, I have concluded that the ankle belonged to “Beste,” my Norwegian grandmother, my dad’s mother. She was totally smitten with me. My birth defects made no difference to her. My father was her only son, and he was adopted. She so wanted my dad to provide her with a grandson, and I was born, to her delight.

The only picture I have with Beste, my Norwegian grandma, my dad’s mother (on the right). On the left is my other grandma, and I am sitting on my mom’s lap.

That my earliest memory, however fragmentary, is of her, is testament to her affection for me. She babysat me while my mom worked part-time as an office secretary, so I spent a lot of time with her. It must have made a deep impression on me, because my second memory, although not of her specifically, is of being on a train with her. I was frightened by the train whistle. I am not completely certain of this memory, because the story was frequently recounted to me years later, so it may be more a memory of those retellings than of the actual event. I was about 3 years old, and Beste was taking me on my first train ride.

My third memory is more vivid and traumatic. When I was about 4 ½ years old, Beste died. I had no idea what that meant at the time, but I do remember being told by my mother that I would never see her again. Apparently, I was asking to see her, and my mom had to somehow explain why I couldn’t. I remember crying inconsolably about it, confused by the loss of one of my favorite people in the world.

My Uncle John and Aunt Edith. Their son, Gerald, is holding me.

What I find noteworthy about these earliest memories is that they have nothing to do with my birth defects. Apparently, this is not that unusual. The fingers and toes I was born with were all I knew from birth, so they were what became familiar to me. I developed no sense there was anything wrong. My fingers were my fingers, and I learned to use them as they were. They were a part of me, and therefore nothing remarkable. Although I remember nothing about my parents’ attitude toward my birth defects, I do know, through conversations with my mom once I was an adult, that they tried to always treat me like there was nothing wrong with me and encouraged others in my life to do the same.

Another early picture of me with my hands clearly visible. Note what my mom wrote on the reverse of the picture, shown below.

My earliest memories also include frequent visits to Seattle Children’s Hospital for surgeries and check-ups. These memories are hazy and run together. Because my condition is relatively rare (amniotic band syndrome, or ABS, occurs in 1 out of 1,200 births to possibly only 1 out of 15,000 births), I was often the center of attention for a group of doctors and eager interns. I was poked, prodded, and photographed and put on display repeatedly so more could be learned about ABS diagnosis and treatment. I remember doctors poking my left foot with a needle in various places and asking me if I felt anything, as they tested me for pain perception. I remember doctors manipulating my fingers, toes, feet and legs to test my range of movement and dexterity. Thankfully, I don’t remember much of this as traumatic. For me, it was just a “normal” part of growing up. The Children’s Hospital was a child-friendly place, with bright, open waiting rooms and lots of toys and books for children.

My grandma Anderson (my mom’s mother) holding me. You can see the amniotic band around my left ankle if you look closely.

Then there were the surgeries, most of them focused on improving the functionality of my hands, legs and feet. The amniotic band that encircled my left ankle had to be removed to improve circulation to my left foot and enable as much normal development of the foot and toes as possible. Fingers and toes lacking bones had to be removed, which meant the loss of a few toes on my right foot and of the pinky on my left hand. The web of flesh that joined my fingers together for about half their length had to be cut into to separate my fingers and improve my dexterity. Following the surgeries were the casts and bandages, and the stitches that had to be removed later.

Even after one of my surgeries, at about 13 months, I am still crawling and smiling. You can see my bandaged hands in this picture.

Growing up with parents and other relatives that loved me and supported my parents through these difficult times had a great impact on me, though. I remember these years as mostly happy times. Playing and snuggling with my dad’s dog at my Beste’s house. Later, playing and petting my own kitty, Fluffy, when my parents moved into their own home. Grandparents, aunts and uncles all eager to hold and play with the new baby. And then my cousins who were born not too long after me, and my sister, Karen, who was born when I was almost 4 years old. I may have been born with birth defects, but the loving closeness of family enabled me to grow up as a typical, loved and well-supported infant.

Playing ball after the bandages are off. For the first year and a half of my life, my parents and I lived at my Beste’s house.

I hope that the story of my early years is reassuring to parents who have a child with birth defects, whether they have ABS, like me, or some other condition. Having birth defects that require regular medical intervention can be painful and traumatic, for the whole family, but as long as the parents and other family members consistently provide a supportive, loving environment, the child can thrive.

Me, at 18 ,months, playing with our cat Fluffy.

Our church was also a big support for my family, combined with a deep faith in God. At such an early age, I had no concept of God, and in many ways, to a young infant, the parents represent God. Remembering how my parents held me in their arms, literally and figuratively, has become a reminder that God continues to do the same for me today. “If I take the wings of the morning, and dwell the uttermost parts of the sea, even there your hand shall lead me, and Your right hand shall hold me.” (Psalm 139: 9-10, NKJV). Words like these became a comfort to me as I got older and had to deal with the difficulties of life, many of which were directly caused by my birth defects.

My happiest and richest preschool memories are from the ages of 4 and 5 (and I am including age 5, even though I did attend kindergarten that year). I will talk about those years in my next blog entry. It was during those years that my circle of people expanded to include supportive adults outside my family. I also made friends with other children in my neighborhood, who did not seem to be put off by my birth defects. There was little in my preschool years to foreshadow the routine ostracism and bullying I would later experience in grade school.

My parents were a typical lower middle-class couple. My father never completed high school, and began his working life as an unskilled laborer, eventually getting a job working for the City of Seattle where he worked in the street sign production shop. My mother completed high school, attended college briefly, and except for a short time working as an office secretary, was a stay-at-home mother. After a couple of years of marriage, they decided it was time to have a child, and in 1960 I was conceived.

There was nothing out of the ordinary in my mother’s pregnancy. As with any typical pregnancy, there was some morning sickness, she gained weight normally, but there were no complications. Her due date was sometime in June. My dad’s birthday was also in June (June 6) and my grandmother, (my dad’s mother), decided I should be born on my father’s birthday. To accomplish that, she took my mom shopping all day on June 5, reasoning that all the exercise would get labor started. Whether or not my grandmother’s method worked, my mom did go into labor that night and I was born on June 6.

My birth, what is so often a joyous occasion, immediately became something else. While in the amniotic sac, through a process that is still not fully understood, amniotic sac tissue gradually wrapped itself around the fingers of both my hands, causing my fingers to develop abnormally. My fingers were pressed together so tightly that they did not completely separate, leaving a web of flesh that left my fingers all misshapen and stuck together for much of their length. My pinky on my left hand was wrapped so tightly by an amniotic band that the bones did not grow. The ends of my fingers were so misshapen that no fingernails developed, with the exception of my right thumb, which was free of amniotic sac tissue, and my pointer finger on the right hand, which developed a tiny, clumpy looking “fingernail.”

Both of my feet were similarly affected. On my right foot the amniotic tissue wrapped around all but my large toe, causing my other toes to become completely deformed, with only two of them developing in any semblance of normal. An amniotic band completely encircled my left ankle, strangling my left foot. This caused the bones in my left ankle to become partially fused, making it impossible to bend my ankle more than a fraction of an inch. It also resulted in abnormal skin and sensory nerve development. The skin on that foot is very smooth and fragile and is prone to developing rashes. It also has no sense of heat or cold and only a limited sense of pain, making it a lot like the foot of a diabetic which has experienced extensive peripheral neuropathy.

Me, a month before I turned 1 year old. This is one of the few pictures I have of my hands before the major reconstructive surgeries.

When the doctor, Dr. Ching, presented me to my parents, he was understandably apprehensive, not being certain what to make of my birth defects. Amniotic Band Syndrome (ABS), which is the name for my condition, has been estimated to occur in 1 out of 1,200 births to possibly only 1 out of 15,000 births, so most doctors have never seen a case of it. He downplayed the seriousness of my condition, and since, in my case, the condition was not life-threatening, nothing was done immediately. Unfortunately, one of my testicles was also affected, being strangulated by an amniotic band. Since during my first few weeks home I cried a lot, my parents became more concerned. Dr. Ching suspected the possibility of cancer, and told my parents to take me to a specialist. Fortunately, being born in Seattle, Washington, there was a place they could go for help, the Seattle Children’s Hospital.

Since my parents were low income, and Seattle Children’s routinely treated charity cases, I was soon scheduled to see a doctor at the hospital. After being evaluated, the doctors were not certain whether I had cancer or not, but recommended removal of the malformed testicle, just to be safe. They also recommended orthopedic surgery for my hands, to remove the webbing between my fingers, so I would have better use of my hands. It turned out I didn’t have cancer, to my parent’s relief, but this ended up being just the first of what would eventually be eight surgeries, the remainder on my hands, feet and legs. One of my earliest memories from childhood is visiting Children’s Hospital and being examined many times by many different doctors and interns.

Since no one knew the cause of ABS (and its causes remain obscure to this day), it caused my parents a good deal of anxiety, making them wonder if there was something they had done wrong. Did my mother somehow not get proper nutrition? Did she possibly take some sort of medication that might have caused the defects? Was an illness during pregnancy to blame? Was there possibly something she was exposed to during early pregnancy? They also experienced a great deal of anguish about how they were going to raise a baby with such serious physical defects. No one in either of their families had ever experienced anything like this. The doctors at Children’s Hospital were very helpful, but the day to day concerns of how to help a little child adjust to a handicap like this were initially overwhelming.

As devout Christians, my parents also questioned why God would allow such a thing to happen to their baby. Although there is never a good answer to such a question, they gradually accepted that bad things just happen sometimes, and that God would help them raise me as best they could. I have struggled at times with this as well, and sometimes I am asked by friends, “don’t you wish you were born with normal hands and feet.” Even though it would be easy to wish for that, over the years I have concluded that without my hands and feet the way they are, I would not be the person I am today. They have become a part of my identity, who I am, and I am okay with that.

Life may have been easier if my hands and feet were normal, but would I have accomplished the same things in life? Would I have developed the resiliency I have today? Would I have developed the same compassion I have for others who have also suffered in life because they were somehow born different, or who were somehow made different due to life circumstances? Because I have had to come to terms with being seen by others as somehow damaged or less than, I learned to empathize with others with birth defects, and also with those who have experienced racism, sexism, and rejection due to “different” gender or sexual orientations. Rejection and ostracism is something I and many others who are different have experienced over and over.

At an early I was encouraged to use my hands. My parents never acted as if there were things I couldn’t do. Note the leg brace on my left ankle in this picture. The bones in that ankle were only partially fused at birth, and the ankle perpetually turned inward, making it hard to walk. Some of my doctors believed I would never walk very well, and certainly never run. More on that another time.

I have also come to the realization that I am not abnormal or damaged, I am just different, and different does not mean bad, or less than. Like anyone, I have certain talents and I lack others, and being born with ABS was not the primary factor in determining many of these talents. Sure, some things appear like they would be more difficult for me to do, but as with all skills, practice generally enables the skill to be developed. It never seemed harder to me, maybe, because my parents, very early on, decided to not limit me, or make excuses for what I couldn’t do right away. Their consistent response to me was, “you can’t do it now, but you can learn, and if you practice, you can do it.”